I am sooo clean!

Hi everybody,
It’s true, I’m about as clean as I’ve ever been thanks to the efforts of my multi-talented wife and the team of staff from St Michael’s. I have today had the pleasure of my first bath since my first visit to the hospice about three months ago. Now please don’t jump to conclusions and assume I have not had my daily ablutions by other means, because I have – the super-efficient palliative care team have seen to that. But to have a bath has become a truly heavenly experience for me despite the to-ing and fro-ing required to get there. Let me explain.

I’m absolutely sure that there are very few readers who need further description of hoisting procedure so I shall suffice to say that I am moved from bed to hoist (naked of course although covered in towels) along the corridor from my room to the bathroom. Here I am transferred from the hoist to the bath lift, essentially a stretcher with a back section that can be elevated. Once settled and secured, I am moved to the bath and lowered in.

From this point, Louise and I (okay mainly I) enjoy nearly an hour of soaking, nook and cranny cleaning pleasure.  We get to talk too, probably one of the only times we get to spend together completely alone.  We sorted a lot today I think.  So clean on the inside as well as the outside.

The only downside is the whole procedure leaves me pretty tired, as obviously the reverse procedure applies.  Still, I wouldn’t miss it for the world and not only that I hope to have another one in a few days' time.

So this is a tired, clean but cheery me saying an early goodnight because I have quite a bit of company tomorrow.
Much love,
Neil x

I was always a bit nervous on bath days, the journey from bed to bath was OK but bath to bed had the added hazard of the sling being wet and the floor as a result. I was probably worrying for no reason, as no risks would have been taken in the hospice, unlike our early days in the house with just myself to do all the manoeuvring, constantly running between the bathroom and the playpen in the living room.

Neil got to experience weightlessness in the bath, which was a great relief on his muscles and skin. Aside from a few hydrotherapy sessions at the hospital, the baths were the only time his body would get relief from being a dead weight, so he really looked forward to them.

Unable to touch his face, to scratch an itch or rub his eyes, Neil had to be constantly on antihistamine as the skin would build up in his eyebrows, eyelashes and beard causing more itching and adding to the torture.  I took time to remove the build-up of skin around his face, gently, so as not to give him any irritation, and trimmed his toenails and fingernails while the water had made them soft. I had to do this very carefully as the skin on the hands and feet had become very soft with lack of use and as a result become more sensitive. I had brought Oscar’s shampoo to wash his hair, again so that the soap wasn’t harsh on his skin.

Again we talked, about my future and Oscar’s future. This was never easy for Neil,  but helping me with decisions for that future, meant that he could be a part of it and I would have the comfort of his input after he was gone. – Louise (2013)

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Original comments:

January 16, 2009 at 11:41 pm
lovely to hear you jolly:)

I particularly hope the nook and cranny cleaning was most enjoyable :p

I am a little myself a little jolly having had several large brandies since i got home an hour ago. You haven’t had many drunken-friday-night-posts to laugh at so far, so may this be the first and dammit, not the last!

Sleep well o clean one, here’s to you old bean!

sue bailey
January 17, 2009 at 10:00 pm
Hi Neil

There’s nothing like having a good soak in the bath and getting into bed. Hope you sleep well! Thinking of you during your stay at the hospice.

Sue x

January 18, 2009 at 3:48 pm
Louise & Neil

Sara (my sis!) prompted me to have a look at your blog and I have since spent some time delving into it. I have to say it is such a breath of fresh air to read, all 3 of you are truly amazing in the way in which you have approached this predicament. The blog is in one instance profound and heartfelt and funny and entertaining in the next. Neil, I get a real sense of your personality from it, it is inspirational that you are using this time in such an active, spirited way. There is no doubt that your legacy will proceed you, and then there’s little of Oscar of course!

Louise, your strength of character is also an inspiration. It was lovely to see the photo of the two of you on your wedding day, it was a lovely wedding.

I am off on a wee adventure to Africa in a few days (Have you been Neil? I wondered when I saw the photo with the elephants in the background!) I will be keeping up to date with your blog as and when I can, it is such a great thing to be doing and I am hooked!

My love to you all


Maria Student
January 26, 2009 at 10:19 pm
Hi you two, I am a second year Nursing student doing a presentation on MND and I have to say you 2 are amazing, I have learnt a lot just by reading your blog it is brilliant thank you
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